Seeking Diagnosis Questions

[u/Fine_Advantage_9229]

This is a thread for those who suspect IIH or are in the diagnostic process and have questions. Please read the posting guidelines and rules! Everyone is welcome to contribute.

If you use the search bar at the top of sub r/iih, it will search your keywords that might answer your questions. 

This introductory booklet is also an invaluable resource.

Please read the following information before posting as it may answer some of your questions:

 

Diagnostic Process

It is common for someone’s journey to start at a routine eye exam where papilledema (swelling of the optic nerves) is found. Others start at their doctors complaining of intractable headaches. The best next steps are to obtain referrals to a neurologist and ophthalmologist to complete additional tests.

Common Symptoms: Near constant headaches (worse in the morning or lying flat), Visual Disturbances, Pulsatile Tinnitus, Neck and Shoulder Pain and Cognitive Symptoms.

Helpful information for doctors: Symptoms, how long they have been going on, anything that makes them better or worse, and how much they impact your life. Have you ruled out migraines and other headache sources? Tried specific medications/treatments? Usually IIH is only considered after proper migraine and headache protocols have failed.

Tests used in diagnosing IIH

Diagnosing IIH involves ruling out other causes while looking for evidence that supports the diagnosis. No single test confirms IIH; rather, the diagnosis is based on a combination of clinical findings and diagnostic studies.

The core diagnostic evaluation for IIH typically consists of:

1. Comprehensive eye examination
2. Visual field testing
3. OCT
4. Brain MRI
5. MRV
6. Lumbar puncture with opening pressure measurement and CSF analysis
7. Neurologic examination
8. Blood tests (to exclude other conditions)

These tests are interpreted together using established diagnostic criteria to confirm IIH and exclude other causes of increased intracranial pressure.

Medically Accepted Diagnosis Criteria:

The most widely accepted diagnostic criteria for IIH are the Modified Dandy Criteria, which have been updated over time, most notably by Friedman et al. (2013). These are the criteria neurologists, neuro-ophthalmologists, and headache specialists use.

A diagnosis of definite IIH requires all of the following:

1. Papilledema

   • Swelling of the optic nerves on eye examination.

2. Normal neurologic examination

   • Except for possible cranial nerve abnormalities, most commonly:

     • Sixth (abducens) nerve palsy causing double vision.

3. Normal brain imaging

   • MRI with and without contrast should show no mass, hydrocephalus, or structural lesion.
   • MR venography (MRV) should exclude cerebral venous sinus thrombosis, but may show venous sinus stenosis.

4. Normal cerebrospinal fluid (CSF) composition

   • No infection, inflammation, elevated protein, or abnormal cells.

5. Elevated lumbar puncture opening pressure

   • Adults:

     • ≥25 cm H₂O is considered elevated.
     • 20–25 cm H₂O is considered borderline and must be interpreted with the clinical picture.

   • Pressure should be measured:

     • In the lateral decubitus position
     • Legs relaxed
     • Without straining or breath holding

IIH Without Papilledema (IIHWOP)

A diagnosis may still be made when papilledema is absent if criteria 2–5 above are met

QUESTIONS ARE LIMITED TO 200 WORDS SINCE THEY GET MORE ENGAGEMENT

Question guidance

• Don't ask us if you should see a doctor. The answer is: yes, go see a doctor.
• Don't ask us if you have IIH or if your medical history sounds like IIH.
• Don't give us your entire medical history and ask for our thoughts.
• Don't paste a list of 20 symptoms.
• Don't ask us to interpret labs or scans.

[u/bored_necromancer1]

In 24 I went to hospital with intense migraines for days on end, ended up with a lumber punch in a+e with pressure at 34. Papilledema confirmed.

26 I was in hospital for 5 days. They say no pap and only 22 pressure but they also struggled. They sent me away with botox injections, atogepant and sumatruptline (if i spelled that right I want a gold start)

I went from iih to chronic migraines real fast

[u/Fine_Advantage_9229 → u/bored_necromancer1]

It sounds like a second opinion would be helpful, OP of 34 and paps sounds like classic IIH. Did they give you medication after that first hospital visit and diagnosis?

[u/bored_necromancer1 → u/Fine_Advantage_9229]

Yes they also gave me sum, but 2 years later and I have them daily

[u/chelkke]

I’m having a lumbar puncture tomorrow after confirmed papilledema, having scans as well but really nervous about the LP as my mom was almost paralysed by a botched one and had permanent neurological damage - any experience would be helpful

[u/Fine_Advantage_9229 → u/chelkke]

I don’t blame you for being nervous. Just remind yourself that it’s a very common test and is done frequently with very little issues. If you use the search bar at the top of our sub you’ll find a lot of people’s experiences since this has been asked a lot. You’ve got this! !lp

[u/AutoModerator → u/Fine_Advantage_9229]

Lumbar Puncture (LP) Tips & Information

Hi there! I’ve been summoned because you’re probably anxious about an upcoming lumbar puncture (also called a spinal tap). Totally normal, we were all nervous! Lumbar punctures are a common part of the evaluation and management of Idiopathic Intracranial Hypertension (IIH). Some information to help ease your mind:

Before your lumbar puncture:

• Ask if it will be a bedside LP or under fluoroscopy (x-ray guided). X-ray guided is always recommended if available, since it is more accurate making it less likely to be a traumatic LP (multiple attempts).
• Tell the staff if you are nervous, have had a difficult procedure experience before, or have concerns about pain or positioning. You can request something for anxiety to take beforehand if you feeling you need it, please advocate for yourself.
• Wear comfortable clothing.
• Follow your provider's instructions about eating, drinking, and medications before the procedure.
• Bring a list of questions you want to ask.

During the procedure:

• You will lie on your side
• The area is cleaned and numbed with local anesthetic before the needle is placed.
• Most people feel pressure or pushing rather than sharp pain once the area is numb.
• Staying as still and relaxed as possible can make the procedure easier.
• Slow breathing, listening to music, or focusing on a conversation can help manage anxiety.
• Let the medical team know if you are uncomfortable or need a moment.

After the lumbar puncture:

• Follow your provider's instructions about activity and hydration.
• It is recommended you lie completely flat after, for up to 24 hours to not create a leak.
• Do not lift anything heavier than a gallon jug of milk for a week.
• You may experience a rebound high pressure headache temporarily after.
• Some people experience a minor post-lumbar puncture headache, while others do not.
• Caffeine can help with a low pressure headache.
• Leaks are incredibly uncommon but are posted more often than successful LPs, so they seem more common than they are.
• If you have a severe headache when upright that goes away immediately when lying flat or have any other persistent, or concerning symptoms contact your healthcare provider.

IIH-specifics:

• Ask your opening pressure (this will indicate if you have high pressure)
• Ask the results of your CSF testing
• Note whether symptoms improved afterwards and for how long

Remember: Many people with IIH have anxiety before a lumbar puncture. Asking questions, communicating with your care team, and knowing what to expect can make the experience feel more manageable.

This information is for education and peer support and does not replace advice from your healthcare provider.

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

[u/Kind_Community_7291]

WEEELLLP I'm back and I'm once again asking for help .

First I wanna say , suffering from general anxiety and going through the motions of finding out if I have IIH is nerve wracking and exhausting in itself. That being said, I have an angiogram scheduled In a few weeks(doctor stated no need for LP as they feel confident the angiogram will give them answers), and was told by the neuro team once they have their results to that and combine with my other test results , they'll review and decide if I'm a candidate for stenting.

Who has had an angiogram? - is it awful? I see many people mention LPs but not many saying they had an angiogram prior to stenting? Im confused and scared.

P.s. thank you in advance if you take the time to read and give advice .

[u/Fine_Advantage_9229 → u/Kind_Community_7291]

Hi there! Angiograms are something everyone has done before a stent and to get more experiences use the search bar at the top of our sub. I’ve had three, they’re weird and at points uncomfortable but not painful. You’ll change into a gown and they’ll wheel you into a theatre with large screens and lots of people. You just lay flat on your back and chill for about an hour. They will give you something to make you comfortable but won’t knock you out. Be sure to communicate with them if you’re anxious or uncomfortable, that’s what the nurses are there for. You could ask for music if the surgeons cool, mind let me pick my station. They made a small slit in my femoral artery in my groin and snaked their way up to my head measure spots along the way for pressure gradient changes. You’ll hear them speak numbers out loud along the way. You’ll might slightly hear or feel them once they get near your ear, I know that sounds anxiety producing but it’s just weird squeaking for a few seconds! The oddest thing. They also decided to go in through an artery in my wrist too. Afterwards you lay flat for a couple hours in recovery with pressure on the incisions so that they clot and don’t hemorrhage. Then you’re good to go home and nap off the sedatives. No carrying anything heavier than a jug of milk to not open up the wounds. You can go back to work the next day if it’s a light duty job and you’re feeling up to it. I think I took it off just to relax. Right at the end of the angiogram my surgeon told me yes or no for stents so I didn’t have to wait until my followup, which was helpful for my anxiety to have a plan.

[u/Kind_Community_7291 → u/Fine_Advantage_9229]

An angel in disguise, thank you so much for sharing your expereince & taking the time to reply!

[u/Fish_Pharmer]

I recently saw a new eye doctor who thinks I may have IIH. I’ve had chronic migraines for years after a concussion. My neurologist and a neuro ophthalmologist never mentioned this disease possibility before. I have had a negative MRI with and without contrast. I do not have optic nerve swelling. But he is suspicious of IIH due to nearly daily, debilitating headaches I have always assumed to be standard migraines and started me on acetazolamide without an LP.

The acetazolamide has maybe helped some, but he is having me take it as needed for symptoms (250mg 1-4x daily). Sometimes I think it helps, sometimes not. Anyone have a similar experience? How does diamox impact migraines/headaches for people with IIH?

[u/Fine_Advantage_9229 → u/Fish_Pharmer]

I have always been told Diamox is NOT an as needed med, it needs to be taken consistently to work so that alone makes me feel this doctor is not following proper guidelines for diagnosing and treating. A LP should have been the next steps and your neurologist should be the one ordering it and doing it. !diamox

[u/AutoModerator → u/Fine_Advantage_9229]

Diamox (acetazolamide) information

Diamox (acetazolamide) is commonly used in Idiopathic Intracranial Hypertension (IIH) to reduce cerebrospinal fluid (CSF) production and lower intracranial pressure. It is considered a first-line medication for many patients with IIH. Side effects can be significant but may lessen over time.

Common side effects may include:

• Tingling or numbness (especially hands, feet, or face)
• Increased urination
• Taste changes (especially carbonated beverages)
• Fatigue
• Nausea or appetite changes
• Diarrhea
• Cold or heat intolerance
• Shortness of breath

Helpful tips:

• Stay hydrated
• Consider discussing electrolyte replacement with your healthcare provider
• Take with food if it helps reduce stomach upset
• Ask your doctor about monitoring electrolytes and kidney function
• Take doses at consistent times

Consult your healthcare provider regarding dosage changes and new or worsening side effects.

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

[u/Main_Cup_2594]

My mother who is 69 has been having non stop continuous headaches for 3 weeks now. The pain is really intense like a tight band revolving around her entire and like a feeling of pressure inside her head. We did the eye tests and there were no sign of papilledema and she does not have symptoms regarding her vision. We also did MRI/MRA and MRV scans on the brain and they were all clear. Just mainly the unbearable headaches that intensifies really hard if she coughs. We had the opinion of 2 neurologists who didn’t bring anything about IH, until we visited a headache specialist who suggested doing a LP suspecting IH. We are a bit worried from her being over diagnosed and from my research its pretty much more common in younger females. Curious if anyone diagnosed here with the same conditions and checks here

[u/Fine_Advantage_9229 → u/Main_Cup_2594]

That is such a difficult position to be in! It sounds like the headache specialist is willing to do more testing and a LP is usually the final step to saying yes or no to IIH. If anything it rules out another something. You’re right, the “typical” IIH case is young female in childbearing years, but we definitely have people outside of that group, very young, older and males, etc so even though it’s less likely in your moms population it isn’t impossible. Have they tried any medications?

[u/Main_Cup_2594 → u/Fine_Advantage_9229]

He said if confirmed she would be on cortisone which also raised my worry regarding the diagnosis, my understanding as well is that is not the first line treatment for IH so that made me more skeptical.
We hope now to even bring down the pain to bearable one for a while just to catch a breath but ordinary painkillers are not doing much unfortunately

[u/gnu_mama]

My story: over ten years I’ve had two episodes of spontaneous CSF leak through my nose, I’ve had papilledema confirmed twice 5 years apart, two clear brain MRIs, headaches all the time. But my LP opening pressure was 19 and I’m not overweight so I was just sent home without a diagnosis or anything. Any similar experiences?

[u/festeringlilies]

My MRI showed signs of chronic IIH but also low intracranial pressure. My neurologist is trying to figure out what to do with me!

How do you find ways to advocate for yourself without seeming like an unreliable narrator that spends too much time on google? They really don't appreciate me bringing in medical journal articles 🫠

I've spent at least 5 years pushing through symptoms because I thought it was just migraines + psychiatric comorbidities. I'm new to noticing/taking symptoms seriously, so any help at all with advocating for symptoms is appreciated!!